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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Starting a 60 day Video diary

trickthefox

Senior Member
Messages
212
Location
Brighton
Hello everyone :)My name is Ren, I am 23 years old and have had M.E. since i was 18, so have lost most my young adult life to this illness. Last year i became bedbound and suicidal, however through diet interventions, and lots of work on my attitude towards the illness, I have gotten my self into a much better placeI decided to document the next 60 days of my life living with M.E. and my mission trying to cure it. I have put the videos up on youtube if anyone is interested, and also made a facebook page for anyone with
Facebook, for people, young and old to connect, share experiences, and just have each other for support :) If anyone wants to check it out and subscribe/follow/comment that would be awesomeThanks for reading :)
 
Messages
10,157
Excellent video Ren.

You are very talented. :)

I watched all your video diary videos. I also checked out your youtube channel.
 

Raindrop

Senior Member
Messages
129
Location
USA
LOVED your video! Wil pass it along. So many people I know got tired of me
sending them anything about this illness very long ago, but maybe I can say something new
and pass it on. I think the music and the catchy ways that you express yourself will
help those who are weary to want to watch the video and get your message. Also,
sometimes people pay attention to people who are very young who are sick rather
than us long-time older sickies! BEST to you!!
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Thank you all very much for your kind words :) :) :) makes the time i put into the video really worth it :)

Good luck Ren

You may also want to include in any vidoer diary a record of how much time you spend upright each day and the ambient temperature as both of these can have dramatic effect on the illness in subsequent days if you have POTS/OI.

Likewise if you are wearing compression clothing or not ( eg stretchy gym wear) on any day and if you spend any lenthg of time in water like the pool or ocean - and a hot spa which will always make me crash next day whereas a cold pool will make me feel better

best

Ally